Lately I’ve been thinking a lot about the value of patients’ voices. As a doctor, I was trained to be somewhat skeptical of what people say, or admit, about their conditions. I was told, though never inclined, to steer the conversation, the history-taking part of the exam, to get the patient’s story in a way that fit succinctly, to answer the questions I was required to ask. The goal of the interview was to form a reasoned opinion about what might be ailing the person, i.e. a diagnosis – and, later, to establish a plan to help make the person feel better.

Journalists, whether they’ll say so or not, tend to do the same. They write an article with a purpose, on assignment or otherwise. And they’ll interview people with the goal of getting pithy quotes to make a point. And they’ll take the words other people and chop ‘em up, and present those to relate a certain narrative. Here too, I’m guilty.

But my point here, today, is about truth, and where the most credible information can be found. Can you trust a selfie?

When I glanced through yesterday’s paper on-line, I read a wrenching account of child abuse. The story, presented in the form of a letter, came through Nick Kristof, a reliable source in my view. I value his columns on environmental and women’s health. When I read the letter he presented, by Dylan Farrow, detailing the humiliating experiences she had as a young child in the home of her adopted mother, Mia Farrow, and the filmmaker Woody Allen, I was stopped by revulsion. Her depiction of an incident had the immediate effect of making me never wish to see another of Allen’s films again. Later on, I read Kristof’s regular NYT column, which includes just a clipped segment of the letter. The picture clouded. He makes a point with which I agree, fully – that girls and women who claim to have been assaulted, or abused, should be taken seriously. But I found myself wondering: how do we know what Dylan says is true?

I’m struck by how two versions of the same story, offered by one journalist, led me along diverging sympathies. One, in which the young woman’s testimony is included fully, left me feeling convinced that the filmmaker, who’s created many of my favorites, shouldn’t receive awards and, in fact, deserves punishment. The other, in which the journalist presents parts of her letter in the context of his admitting a relationship with the family and some legal issues around the case, left me wondering if the celebrity is a victim of finger-pointing or distorted recollections of things that happened to a child a long time ago.

The bottom line is that I certainly can’t know what happened, nor can most readers. Memory of pain, illness, trauma and ordinary experience is subjective.

Getting back to medicine –

Few journalists I know would want a doctor to not listen attentively to their account of their illness, however long. Many doctors claim they’re giving patient-centered care, but are they really listening to their patients’ stories? How do professionals count, or discount, an individual’s rendition of a story, and render a diagnosis or prescription?

My only conclusion is that it’s usually worth hearing what a person says, directly. She is a key witness to her experience. Doctors and journalists may aspire to being more objective, by documenting what happened to a person or group. They draw their own pictures, or graphs, and offer separate explanations of events and phenomena. But they make edits all the time, consciously and otherwise.

Last week I traveled to Atlanta, Georgia, where the American Society for Bioethics and Humanities (ASBH)* held its annual meeting. Most of a thousand people participated in the four-day conference. The sessions drew a mix of nerdy physicians like me, nurses, professional bioethicists, philosophy professors, a few lawyers, historians and artists.

It was really a lot of fun. Fun, that is, if you’re into subjects like philosophy in medicine, literature in medicine, medicine in literature, ethics in medicine, technology and privacy, justice and parsimony in health care, etc. I hadn’t heard the word “epistemic” so many times since I was in college. I felt young and idealistic, talking seriously about philosophy, as though it matters. (For the record: it does.) This was, clearly, a medical society meeting unlike others. For instance, an academic named Woods Nash, of the University of Tennessee, gave a talk on David Foster Wallace’s story, “Luckily the Account Representative Knew CPR.”

original cover image (Wikipedia), publisher: Random House

On the first day, I walked into a provocative plenary talk by Julian Savulescu, an ethicist and Oxford professor. He presented an argument that that using medical tools for the purpose of moral bioenhancement might be a good thing. (If this topic brings to mind A Clockwork Orange, you’re on track. Think also of Huxley’s soma, as a questioner raised.) All very serious. The next day, a packed ballroom of people heard from Amy Gutmann, President of the University of Pennsylvania and Chair of the Presidential Commission for the Study of Bioethical Issues. She spoke about the concept of deliberative democracy, and the value of teaching ethics. Toward the end, she entered into a humorous and seemingly candid discussion of men and women in the workplace, “having it all,” and common sense. “Time is finite,” she mentioned.

I could go on, and list all the lectures and smaller sessions, but this post would get dry. Besides, I couldn’t possibly attend each one, nor can I give all the speakers’ due credit. Some talks were better than others, as meetings necessarily go. But I can’t resist a plug for the presentation by Rosemarie Garland-Thomson, a professor of women’s studies and English at Emory, on perspective and disability. Another favorite had to do with technology and science. David Magnus, of Stanford University, considered whether research accomplished through gamification – a means of crowd-sourcing science – on platforms like FoldIt, EteRNA and EyeWire should be covered by the usual rules for biomedical research. “Are the players scientists?” he asked.

The tone, overall, was intense. Intellectual, brain-stimulating… By contrast to other medical meetings I’ve attended, there was little glitz, scant makeup and limited Wireless. Perhaps the most surprising aspect of the ASBH conference was the distribution of freebies at booths in a display area, where attendees gathered for an opening evening reception and, on other days, breakfasts. Of course it was all minor stuff handed out, like pens and candy, mainly from university departments seeking applicants for fellowships, and academic presses selling books. The most substantive, and useful, gift I received (or “accepted” – a term with greater moral accuracy, from my perspective) was a green umbrella from the Hastings Center – a bioethics stronghold where I’d love to spend some time learning and doing research, in the future.

On Sunday morning, I attended one of the last sessions, on decision aids in bioethics. We lingerers were treated to three terrific talks. I can’t cover them all. So to close this post, I’ll refer to the promising work of Michael Green, a physician and bioethicist at the Penn State College of Medicine. He and colleagues have been developing an on-line decision tool for advanced care planning with grant support from the NIH, the American Cancer Society and elsewhere. The website, MakingYourWishesKnown.com, enables individuals to detail their wishes through an interactive questionnaire. Green and his colleagues collect and publish data on users’ feelings upon using the decision aid. They can measure, for instance, if it gives people a sense of control, or reduces fear, and if patients’ families and doctors find the “outputs” useful. I, for one, intend to try out the MYWK website.

And I do hope to attend another ASBH meeting. Next year’s is planned for October, in San Diego.

A few days ago I met Katy Butler, author of Knocking on Heaven’s Door. Her revealing book about her elderly father’s slow death and her mother’s reaction to that – by learning to question doctors and, ultimately, choosing “less” – is a cautionary tale of too much medicine. The prose is elegant, and daughter’s point of view, graspable.

What emerges, through Butler’s voice about her parents’ ordeal, is anger. She tells of the pacemaker that was placed in her father’s heart. It kept him alive through multiple strokes and progressive debility. Her father’s protracted illness became a burden to her aging mother, who cared for her husband through thick and thin. Butler minds the costs of the procedure and doctors who, with seemingly little contemplation, inserted the device and billed for it. When her mother, in her eighties, became weak with heart valve problems, she opted not to have surgery. That was a triumph, Butler suggests – that her mother didn’t let the doctors take her heart, too.

And so she writes. There’s value in this intensely personal story. Because every day in hospitals patients receive treatments they don’t want, that they wouldn’t have selected if they had understood in advance what the consequences would or could be. Too many people, especially the elderly, die after they’ve had futile, intensive or just plainly aggressive care. Butler points to the pitfalls of a system that pays doctors to do procedures rather than to communicate.

Anger is an understandable reaction to a system that dehumanizes us (patients), that treats human bodies as containers of billable ailments and broken parts. I get that. But most of the many doctors I know go about their daily work with good intention – to heal. Plus, there’s a danger of underselling, or not choosing, care that could extend life, with good quality, for years or decades.

It’s not easy to reconcile the positions of over-treated patients and over-worked doctors. Some say the answer is in better medical education, in programs like narrative medicine, in patients’ gaining knowledge and asking more questions, or in revamping doctors’ payment incentives. I don’t see an easy solution from the doctors’ side, except for what’s obvious: practicing physicians need time to think, to contemplate the purpose of what they’re advising in each patient’s case. They should be paid for intellectual and communicative (non-PR) efforts. And they should learn, or be given enough minutes in each visit assigned, to hear, listen and respond to patients’ concerns.

The author of Knocking on Heaven’s Door, Katy Butler, mentioned that she’s eager to give grand rounds, to speak before doctors including cardiologists. She’d love to tell and teach them, and us, a thing or two.

One advantage of blogging is that I can share my ideas, directly, with people who find them interesting, provocative or otherwise read-worthy. So for those who are curious, here is my general view on health care reform (HCR) by any name, in 3 points:

First, we need it. The U.S. health care system doesn’t work. It doesn’t serve doctors. Good physicians are few and far between in some geographical regions, in primary care and in needed specialties (like oncology and geriatrics). It doesn’t serve people who might be patients, except if they happen to work for a generous employer that offers a good plan (few do), they are rich enough so they might spend thousands each year out-of-pocket and out-of-network, or they are most fortunate of all, having no serious medical problems to contend with or pay for.

Second, although I wholeheartedly support the Affordable Care Act, because it’s a step in the right direction, I don’t think the legislation goes far enough. We need a simpler, single-payer solution, as in a national health care program, Medicare-style, for all. Why? Because the quasi-plan for state-based exchanges, each with competing offerings and not necessarily interpretable terms of coverage, is too complicated. There’s no reason to think a free market operating at the state level would match the public’s or many individuals’ medical needs. As long as each provider is trying to make a buck, or a billion, it won’t put patients’ access to good care first. Besides, there’ll be administrative costs embedded in each exchange that we could live better without. As for private insurers, well, I couldn’t care less about the well-being of those companies or their executives’ incomes.

Profit is not what medical care is about, or should be about. What we need is a simple, national health plan, Europe-style, available to everyone, with minimal paperwork and, yes, limits to care.

Third point – on rationing.

Some of my readers may wonder how I, who support some costly components of good medical care, like providing breast cancer screening for middle-aged women and sometimes giving expensive drugs to people with illness, favor health care reform. New cancer meds cost around $100,000 year, more or less, as do innovative treatments for cystic fibrosis, inflammatory bowel disease, rheumatoid arthritis and other conditions. I don’t think the sane solution is abandoning expensive but life-saving and quality-of-life-improving treatments.

The hardest part of this debate and what’s so rarely discussed is the appropriate limits of medical treatment, not based on costs – which we can certainly afford if we pull back on administrative expenses of health care and insurers’ huge profits – but on factors like prognosis and age. So, for example, maybe a 45 year old man should get a liver transplant ahead of an 80 year old man. Screening for breast cancer, if it is valuable as I think it is, should perhaps be limited to younger women, maybe those less than 70 or 75, based on the potential for life-years saved. Maybe we shouldn’t assign ICU beds to individuals who are over 85, or 95, or 100 years old.

The real issue in HCR, if you ask me, is who would decide on these kinds of questions. That conversation’s barely begun, and I would like to participate in that…

Meanwhile, the Supreme Court is busy doing its thing, sorting out whether the Affordable Care Act is constitutional or not. I’m glad they’re on the case, so that they might find that it stands and we can move on and forward.

This point follows closely from the previous, that doctors need to talk with patients earlier on end-of-life issues. But the central issue here is that most patients with cancer are unrealistic about their prognosis, and that oncologists do a terrible job in correcting their misperceptions:

…According to one recent study, most of the patients with lung cancer expected to live for more than 2 years even though the average length of survival is about 8 months.3

Resetting expectations will be difficult. Tools are available to help the oncologist provide truly informed consent by sharing anticipated response rates, chances of cure (always near zero for patients with metastatic solid tumors), and side effects…Many oncologists do not have these skills,43 so use of a decision aid may help…

What they’re describing amounts to Lake Wobegon effect, from the patient’s perspective, and that may be fair enough.

But I think these authors are letting oncologists off easy. Why it is that they lack “these skills,” i.e. what it takes to help patients face reality? It happens yesterday I was reading Dave deBronkart’s book, How to Laugh, Sing and Eat Like a Pig, on his experiences as a patient with metastatic kidney cancer, and he cites a terrific, pertinent excerpt in Dr. Jerome Groopman’s The Anatomy of Hope:

Hope, unlike optimism, is rooted in unalloyed reality. …Hope acknowledges the significant obstacles and deep pitfalls along the path. True hope has no room for delusion.

Clear-eyed, hope gives us the courage to confront our circumstances and the capacity to surmount them. For all my patients, hope, true hope, has proved as important as any medication.

I don’t think oncologists need (or better, should need) decision aids to help them reset patients’ unrealistic expectations. What they need is time, and thoughtfulness, and the capacity to be genuinely empathic.

If our health care system promoted trusting, and ideally longer, relationships of cancer patients with their physicians, patients would be less fearful of hearing the truth, and their doctors would be less afraid to speak honestly with them. This would reduce cancer care costs by lessening futile treatments, and would improve the quality of the patient-doctor relationships in oncology, besides the quality of care, in itself, and patients’ experiences as they near the end of life.

The latest NEJM features a bigstory about a small trial, with only 39 patients in the end, on the potential for placebos to relieve patients’ experience of symptoms. This follows other recent reports on the subjective effectiveness of pseudo-pharmacology.

My point for today is that placebos are problematic in health care with few exceptions. First, in clinical trials, patients sometimes agree to take what might be a placebo so that researchers can measure effects of a drug, by comparison. A second instance is, possibly, when doctors treat children. Even then, I’m not sure it’s wise to “train” kids to take a pill and expect to feel better.

The relationship of an adult patient with a physician involves, or should involve, trust and mutual respect. A person cannot possibly give informed consent for a treatment he or she doesn’t know about. So if the doctor’s giving a placebo to the patient, and making the decision for the patient because it might help, that diminishes the patient’s autonomy, or self-determination. In simpler terms, it’s condescending.

You might consider the hypothesis that there’s nothing wrong with something if it makes you, or someone else, feel better. But that’s kind of like saying the ends justify the means.

A placebo is, by definition, manipulative. I wouldn’t want any doctor to treat me that way.

This week the Times ran a leading story on a new med school admission process, with multiple, mini-interviews, like speed dating. The idea is to assess applicants’ social, communication and ethical thinking (?) skills:

…It is called the multiple mini interview, or M.M.I., and its use is spreading. At least eight medical schools in the United States — including those at Stanford, the University of California, Los Angeles, and the University of Cincinnati — and 13 in Canada are using it.

At Virginia Tech Carilion, 26 candidates showed up on a Saturday in March and stood with their backs to the doors of 26 small rooms. When a bell sounded, the applicants spun around and read a sheet of paper taped to the door that described an ethical conundrum. Two minutes later, the bell sounded again and the applicants charged into the small rooms and found an interviewer waiting. A chorus of cheerful greetings rang out, and the doors shut. The candidates had eight minutes to discuss that room’s situation. Then they moved to the next room, the next surprise conundrum…

This sounds great, at first glance. We all want friendly doctors who get along. It might even be fun, kind of like a game. (Sorry for the cynicism, injected in here, but it’s needed.) I’d even bet that the interviewers and successful interviewees would emerge feeling good about the process and themselves.

But don’t you think most premed students, who get through college, and numerous letters of recommendation, take the MCATS and achieve scores high enough to get an interview, are smart enough to get through this social test without failing? It’s what these young men and women are thinking, internally, that matters. According to the same article, the country’s 134 medical schools have long relied almost entirely on grades and the MCAT to sort through over 42,000 applicants for nearly 19,000 slots.

My math: that means nearly 19 out of 42 (almost half!) of med school applicants get in, here in the U.S.

If we want future doctors who are smart enough to guide patients through tough, data-loaded, evidence-based and ethically-complex decisions, we should make the academic requirements for entry more rigorous, especially in the areas of science, math and analytical thinking.

What they’re suggesting is a simple rule: “Patients must be well enough to walk unaided into the clinic to receive chemotherapy.” There are necessary exceptions, they point out, such as cancer patients disabled by another medical condition but who otherwise can carry out daily activities with relative normalcy. (I’ll offer an example: say a 50-year woman with multiple sclerosis who is wheel-chair bound but otherwise essentially well; she would be a candidate for treatment in this scenario.) But in general the authors would hold off on chemotherapy for cancer patients with a limited performance status – a measure that oncologists use to assess how well, or disabled, a person is in their capacity to work, perform ordinary daily activities and care for him or herself.

I’m not sure I agree with the “walking” threshold, or ECOGperformance status 3 or below, as the authors describe: “meaning that they are capable of only limited self-care and are confined to a bed or chair more than 50% of waking hours.” These criteria are subjective and problematic. But I do think the authors are onto a central, unavoidable issue in reducing health care costs. That is by limiting care, i.e. by rationing.

For elderly patients with cancer, especially for those who have significant other illnesses, it may not be appropriate for doctors to give chemotherapy and other, non-palliative cancer treatments. The authors don’t (dare) advise a particular age cut-off for therapy; they suggest using performance status criteria. They conclude this section of the paper on cutting cancer care costs with this statement: “Implementation of such a simple threshold could dramatically decrease the use of chemotherapy at the end of life.”

The authors are right, that we (oncologists and other doctors) shouldn’t be in the business of routinely giving aggressive treatments to patients who are very old and frail, who are more likely to suffer harms of treatment than potential benefits. Not just because we can’t continue driving up U.S. health care costs indiscriminately, but because when very frail, elderly patients are given chemotherapy they’re less likely to recover after treatment. By not saying “no” to patients who are too fragile for a requested intervention, or by simply treating patients who are so feeble or demented, or both, that they’re unable to say “no” for themselves – such as sometimes happens in nursing homes and other chronic care facilities, doctors may cause more harm than good.

Some readers of this blog may be wondering how I can reconcile this position with what I’ve said about access to Avastin for women with advanced BC. In my opinion, patients’ age and, broadly, their functionality – if they can think and communicate seems at least as relevant as whether they can walk – should be factored into the risk/potential benefits analysis of almost any medical treatment.

So if we’re going to consider restricting cancer drugs and interventions based on cost, indirectly or overtly, we should account for patients’ ages, the potential length and quality of life to be gained: If there’s a 50 year old patient who might benefit from a costly cancer treatment, it’s likely that person will benefit more from that drug than would a 70 year old patient, or a 90 year old patient. It’s also more likely, but not a sure thing, that a younger, otherwise healthier patient will tolerate a given treatment with fewer side effects.

Berwick now heads the Centers for Medicare & Medicaid Services. When he spoke in April, on transparency and how we might simultaneously cut costs and improve care, I thought his talk was pretty good. This morning, through Twitter, I came upon a short clip from a Berlin conference in 2009. Here, he tackles the meaning of patient-centered care. It’s near-perfect:

…The errors and unreliability of health care are not the main reason that I fear that inevitable day in which I will become a patient…I can use my own wit to stand guard against them…

<rather>

…What chills my bones is indignity. It is the loss of influence on what happens to me. It is the image of myself in a hospital gown, homogenized, anonymous, powerless, no longer myself. It is the sound of young nurse calling me “Donald” which is a name I never use, ‘It’s “Don.’…

It is the voice of the doctor saying ‘we think,’ instead of ‘I think,’ and thereby placing that small verbal wedge, the pronoun ‘we,’ between himself as a person and myself as a person…

Bravo!

Why I like this clip so much is that Berwick gets the nuanced language of medicine in a way few doctors, in my experience, do. He’s not so much afraid of data and making decisions or even errors, which are in theory surmountable problems, through better information and education, and despite everything may not lead to a “cure” or even a person’s survival, per se. He most fears being perceived as an object, without respect for his concerns and preferences.